Download Fact Sheet - Redwood Caregiver Resource Center

Redwood Caregiver Resource Center
141 Stony Circle, Suite 200
Santa Rosa, CA 95401
(707) 542-0282 or (800) 834-1636
Fax (707) 542-0552
Email: [email protected]
Web: http://redwoodcrc.org
Fact Sheet
Parkinson’s Disease
Serving: Del Norte, Humboldt, Mendocino, Lake, Sonoma,
Napa & Solano Counties
What is Parkinson’s Disease?
Parkinson’s disease (PD) is a progressive, neurological disease that mainly affects movement.
Parkinson’s disease results from the destruction of nerve cells in a part of the brain called
the basal ganglia.
Different parts of the brain work together by
sending signals to each other to coordinate all
of our thoughts, movements, emotions, and
senses. When we want to move, a signal is
sent from the basal ganglia to the thalamus and
then to the cerebral cortex, all different parts of
the brain. Nerve cells in the brain communicate
by using chemicals. A chemical (neurotransmitter) called dopamine is produced in a group
of cells called the substantia nigra and is essential for normal movement. When the cells
die they can no longer produce and send dopamine so the signal to move doesn’t get
communicated. Another chemical in the brain,
acetylcholine, is controlled by dopamine. When
there is not enough dopamine, there is too
much acetylcholine, causing the tremors and
muscle stiffness that many people with PD experience.
People with Parkinson's often exhibit a "shuffling" gait, tremor of the arms and legs when
they are resting, muscle stiffness, and stooped
posture. Some individuals also have cognitive
(thinking, judgment, memory) problems.
incidence of Parkinson’s will increase with the
.aging of the baby boomers. Although PD is
more common in older persons, some people
do begin to show symptoms before they are 40
years old.
Symptoms
All persons with Parkinson’s do not develop the
same symptoms and the symptoms change
over time as the disease progresses. The primary symptoms of Parkinson’s disease are:

Rigidity or Stiffness: In addition to making movement difficult, stiffness can also
cause muscle ache and muscles may tire
easily. The number of people with PD who
experience rigidity is estimated to be between 89% - 99%.

Tremor: Estimates of how many people
with PD develop tremors range from 69% 100%. Of those who do develop tremors,
only a few develop tremors that are disabling. The tremor is usually most pronounced at rest. Tremors often start on
one side of the body — usually with the
hand — but may also involve the arms, feet,
legs, and chin.

Slow Movement (bradykinesia), Loss of
Movement (akinesia): Slowness occurs in
77% - 98% of those diagnosed with PD.
Some individuals also experience episodes
of “freezing” where they cannot move for
several seconds or minutes. This is often
called an “on-off” symptom.
Who Gets Parkinson’s Disease?
Estimates regarding the number of people in the
United States with Parkinson’s range from 500,000
to 1,500,000 with 50,000 new cases reported annually. Since Parkinson’s is more common in people 60
years old and older, it is expected that the

Balance and Walking Problems: These
may result in a stooped appearance and shuffling gait and can cause falls. Most people do
not develop postural problems until many years
after they have been diagnosed.
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Although there are no specific tests for Parkinson's disease, there are several ways of making a diagnosis. Usually a diagnosis is based
on a neurological exam that covers evaluation
of the symptoms and their severity. If symptoms are serious enough, a trial test of antiParkinson's drugs may be used. Brain scans
may be made to rule out other diseases whose
symptoms resemble Parkinson's disease.
Symptoms usually affect one side of the body
more than the other side. There are always two
primary symptoms present when a diagnosis of
Parkinson's disease is made.
treated surgically for PD as the surgery
can make the cognitive problems worse.

Speech problems. An estimated 60% to
90% percent of people with Parkinson's
will develop some difficulty speaking. A
person with PD may speak very softly in a
monotone (hypophonia). Speech impairment is referred to as dysarthria and is often characterized as weak, slow, or uncoordinated speaking that can affect volume
and/or pitch. The voice may sound hoarse
or come out in short bursts. Often, speech
problems worsen over time. Speech
problems can be helped with speech
therapy.

Swallowing problems.
swallowed. People with Parkinson's and
their caregivers should take care to watch
for signs of choking, food stuck in the
throat, or increased congestion after eating. Due to difficulty coughing and clearing the lungs, people with Parkinson’s also run an increased risk of developing
pneumonia. Swallowing problems can be
helped with speech therapy.
According to the Hoehn and Yahr scale, Parkinson's disease has the following five stages:





Stage I: Symptoms are only on one side of
the body
Stage II: Symptoms are on both sides of
the body
Stage III: Balance is impaired
Stage IV: Assistance is required to walk and
other symptoms are severe
Stage V: Wheelchair bound
People with Parkinson’s may also develop
some of the following symptoms:


Additional symptoms may include:
Depression. Approximately 40% of people
with PD develop depression, which can be
treated with medication and/or counseling.
It is important for people with PD and their
caregivers to report signs of depression to
the physician.
Memory problems, mental confusion
and/or dementia. Studies have indicated
that more than 50% of people with Parkinson's have mild intellectual changes; about
20% have more substantial cognitive impairment. Memory problems in Parkinson's
are typically milder than in Alzheimer's disease. In Parkinson's disease, the person
may have difficulty concentrating, learning
new information and recalling names.









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Restlessness
Difficulty writing
Anxiety
Urinary tract infections
Excessive sweating
Sexual problems
Sleep disorders
Eyelid Closure
Skin problems
Lack of Facial Expression
All medications should be monitored since
high doses of some drugs used for Parkinson's can cause hallucinations or confusion. Dementia occurs in 25% to 40% of
people with PD. Individuals with cognitive
problems, including dementia, cannot be
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Treatment/Symptom Management
Drug Therapy & Research
If the disease progresses beyond minor symptoms, drug treatment may be indicated. Drug
therapy for Parkinson's typically provides relief
for 10-15 years or more. The most commonly
prescribed medication is L-dopa (levodopa)
which helps replenish some of the lost dopamine in the brain. Sinemet, a combination of
levodopa and carbidopa, is the drug most doctors use to treat Parkinson's disease. Recent
clinical studies have suggested that the class of
drugs called “dopamine agonist” should be
used prior to levodopa (Sinemet) except in patients with cognitive problems or hallucinations.
In those older than 75, dopamine agonists
should be used cautiously because of an added
risk of hallucinations. Other drugs are also used
and new drugs are continually being tested. It
is common for multiple drugs to be prescribed
because many of them work well together to
control symptoms and reduce side effects.
It is very important for people with PD to work
closely with their physicians. Many of the drugs
used to treat Parkinson’s become less effective
over time so physicians will often try different
combinations of drugs as the disease progresses. People with Parkinson’s respond differently to drugs so they may need to work with
their physician to find the drug or combination
of drugs that work for them. It may take several weeks or months before a drug begins to
work. Many Parkinson’s drugs can also “wear
off” in between doses during the day so people
with PD need to pay close attention to the times
they take their medications and to plan their
activities carefully.
Side effects of medications can also be a problem. For some medications the side effects are
most severe when the person first begins taking the drug and gradually disappear or lessen.
For other medications, side effects may appear
after several years. For example, long-term
levodopa use may result in large uncontrollable
movements (nodding, twitching or jerking)
called "dyskinesias," or “on-off” attacks where
the person will become frozen (can’t move) for
a few seconds or minutes. Confusion may develop as a side effect after about eight years.
Surgery
Surgery for the treatment of Parkinson’s is used
when symptoms become very disabling and are
not responding to drug therapy. Additionally,
people that undergo surgery must be in good
health overall, younger than 70, and mentally
competent (no cognitive symptoms or dementia). Different symptoms are improved depending on the area of the brain that is targeted.
Surgery on the left side of the brain will improve
symptoms on the right side of the body and
surgery on the right side will improve symptoms
on the left side of the body. There are three
types of surgery for PD: lesioning (ablative),
deep brain stimulation (DBS), and restorative
(transplants).
In lesioning surgery, a very small part of the
brain is destroyed. Deep brain stimulation involves the implantation of a small wire in the
brain through which high frequency stimulation
can be sent by the person to control his or her
symptoms. Surgery can be performed bilaterally (both sides) or unilaterally (one side). In
most cases, it is recommended that individuals
undergo surgery on only one side to begin with
and, if successful, their physician may recommend DBS on the other side if needed.
In restorative surgery, new nerve cells are implanted in the brain to take the place of the
nerve cells that have died. In the United
States, lesioning surgery and one form of DBS
(stimulation of the thalamus) have been approved as treatments. Two other forms of DBS
and restorative surgery are still considered experimental.
The surgery for both lesioning and DBS is similar. The person’s head is secured in a frame to
keep it from moving and imaging is done so
that the surgeon has a clear picture of the
brain. A small hole is made in the skull and a
very thin wire is inserted into the brain. The
surgeon uses several methods to determine
when the wire is exactly in place, including having the individual move and observing how the
wire affects symptoms. For this reason, the
person is awake during the surgery.
In lesioning surgery, once the physician has
located the specific area for treatment, an electrical current is sent down the wire and a small
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area of nerve cells is destroyed. In DBS, the
wire is left in the brain and is attached to a
small device implanted under the skin on the
individual’s chest (similar to a pace-maker).
Using a magnet, the person can then turn the
stimulator on or off. The amount of stimulation
can be programmed by the physician to provide
the maximum amount of symptom relief. DBS
is usually done as two separate surgeries, one
to implant the generator and one to implant the
wire.
Restorative surgery is still experimental. Two
types of restorative surgery are currently being
tested, one using human fetal tissue and the
other using fetal tissue from pigs. The goal of
the surgery is to implant cells (dopamineproducing nerve cells) that will replace those
that have died. Several studies have been
done and the operations seem to have been
successful for some individuals. These surgical
options have the added risk of possible tissue
rejection. In the future, surgeons may be able
to transplant genetically engineered cells from
the person’s own body and thus lower the risk
of rejection. As in drug therapy for PD, new
techniques and ideas for the surgical treatment
of PD are continually arising.
Lesioning & DBS Surgery
Surgery:
Thalamotomy: Lesioning surgery in which a
small portion of the thalamus is destroyed.
Improves:
Tremor
Somewhat Improves:
Rigidity (stiffness)
Does not Improve: Bradykinesia
Surgery:
Pallidotomy – Lesioning surgery in which a
portion of the globus pallidus is destroyed.
Long-term studies indicate that the improvements may last for five years or longer.
Improves:
Dyskinesia
Rigidity
Tremor
Somewhat Improves:
Balance
Freezing
Walking
Soft speech
Surgery:
STN DBS — Deep brain stimulation of the subthalamus nucleus. May be the most promising
surgery. Not approved by FDA.
Improves:
Slowness
Rigidity
Tremor
Dyskinesia
“On-Off” problems
Increases “On” time
Reduction in levodopa needed
Surgery:
Thalamus DBS — Deep brain stimulation of
the thalamus
Improves:
Tremor
Surgery:
GPi DBS – Deep brain stimulation of the globus
pallidus, pars interns. Usually done bilaterally.
Not approved by FDA.
Improves:
Dyskinesia
Somewhat Improves:
More “On” time
Tremor
Slowness
Rigidity
Parkinson’s and Dementia
People with PD who develop dementia tend to
be older and to have developed the disease
later in life. It is very important to have the dementia diagnosed accurately. Depression,
which is common in people with PD, can sometimes cause the same symptoms as dementia.
Also some of the medications used for PD can
cause hallucinations. These medications can
also make the symptoms of dementia worse.
In older people, the dementia may not be a
symptom of PD but could be a symptom of Alzheimer’s disease. Therefore it is important for
the person with PD and the family caregiver to
work closely with his or her physician to rule out
other possible causes for the changes in behavior and thinking.
Some of the signs of dementia in PD include
slowed thinking, a more passive personality,
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memory problems, and trouble with decisionmaking. There is a form of dementia called
Dementia with Lewy Body (DLB), in which the
person suffering from dementia also shows
signs of PD such as slowness of movement,
stiffness, tremor and falls. In general, if a person who has been diagnosed with PD begins to
show signs of dementia within 18 months, it is
likely that they have DLB rather than PD. People with DLB do not respond well to the medications used for PD such as levodopa. Dementia
in DLB is different from that in PD. In DLB
people may have very vivid hallucinations or
delusions.
Living Well with Parkinson’s
Care for people with Parkinson's includes a
well-balanced diet and regular exercise. Physical, occupational or speech therapy may be indicated for some people. Physical therapy and
muscle strengthening exercises can be a key
part of managing Parkinson's disease. A physical therapist can help develop and monitor a
home exercise program. A good exercise routine should include strengthening and flexing all
limbs, stretching legs and feet, walking, facial
and breathing exercises, and specific exercises
to gain better control in swallowing. An occupational therapist can help with walking and accomplishing everyday activities. People with
PD lose the ability to move automatically. A
good exercise program can help people with
PD learn how to think about their movements
and to plan their movements one step at a time.
“Move it or lose it” is a phrase that most people
with PD learn to live by.
A speech therapist can help improve voice volume, quality, and articulation. Therapeutic exercises, including verbalizations and tongue
movements, often can make a difference. In
some cases where speech is severely impaired,
a machine or computer-generated voice can be
used. It also may be important for families to
learn new strategies to help the person communicate. If the person is confused, for example, it may be necessary to use verbal cues to
understand or assist. The inability to articulate
can be very frustrating. Offer reassurance and
support. This may alleviate some of the person's anxiety over not being able to express a
thought or need.
Diet also plays an important role in keeping a
person with PD healthy and as active as possible. Choose foods that are easy to eat when
someone is having problems swallowing. It is
also important that people get enough nourishment. Some physicians recommend that
people taking levodopa eat foods that are lower in protein because protein can make the
levodopa less effective.
It is also very important for the person with PD
and his or her caregivers to take care of themselves emotionally. Support groups can be extremely helpful. Many of the organizations
listed in the resource section below offer support groups, counseling and additional information on PD and its treatment.
Credits:
Bronstein, J. M., DeSalles, A., and DeLong, M.
R. (1999). Stereotactic Pallidotomy in the
Treatment of Parkinson Disease, Archives of
Neurology, 56, 1064-1069.
Cram, D. L. (1999). Understanding Parkinson’s
Disease, Addicus Books, Inc., Omaha, Nebraska.
Jankovic, J. (1999). New and Emerging Therapies for Parkinson Disease. Archives of Neurology, 56, 785-790.
Gleb, D. J., Olive, E. and Gilman, S. (1999).
Diagnostic Criteria for Parkinson Disease, Archives of Neurology, 56, 33-39.
Sanchez-Ramos, J. R. and Clarence-Smith, K.
(Eds.) (2000). Lewy Body Disease and the
Similarity to Parkinson’s Disease, Parkinson’s
Disease Update, Issue 110, 753-757.
Friedman, J. H. and Fernandez, H. H. (2000).
The Nonmotor Problems of Parkinson’s Disease, The Neurologist, 6(1), 18 – 27.
National Institute of Neurological Disorders and
Stroke (2000). Parkinson’s Disease. Hope
Through Research.
Resources
Books:
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Parkinson’s Disease & the Art of Moving,
John Argue, (2000), New Harbinger Publications, Inc., 5674 Shattuck Avenue, Oakland, CA
94609,
(800) 748-6273.
Parkinson’s Disease: The complete Guide
for Patients and Caregivers, A. N. Lieberman
(Ed.) and Frank L. Williams, (1993), Fireside/Simon and Schuster, Inc., 1230 Avenue of
the Americas, New York, NY 10020 (212) 6987614.
Caring for the Parkinson’s Patient: A Practical Guide (2nd Edition), J. Thomas Hutto, M.D.,
Ph.D. and Raye Lynne Dippel, Ph.D. (Eds.),
(1999), Prometheus Books, 59 Glenn Drive,
Amherst, NY 14228-2197, (800) 421-0351.
Parkinson’s Disease: A Self-Help Guide,
Marjan Jahanshahi, M.D., and C. David
Marsden, M.D., (2000), Demos Medical Publishing, 386 Park Avenue South, Suite 201,
New York, NY 10016, (212) 683-0072.
Web Sites:
Awakenings: The Internet focus
on Parkinson’s Disease
www.parkinsonsdisease.com
Parkinson’s Disease Webring
www.pdring.com
People Living with Parkinson’s
www.plwp.org
People with Parkinsons
www.parkinsoncare.org
We Move
www.wemove.org
Organizations:
American Parkinson Disease Association,
Inc.
1250 Hylan Boulevard, Suite 4B
Staten Island, NY 10305-4399
(718) 981-8001
(800) 223-2732
e-mail: [email protected]
web site: www.apdaparkinson.com
National Institute of Neurological
Disorders and Stroke
Building 31, Room 8A-06
31 Center Dr., MSC 2540
Bethesda, MD 20892-2540
(800) 352-9424
web site: www.ninds.nih.gov (e-mail is available through the site)
National Parkinson Foundation, Inc.
Bob Hope Parkinson Research Center
1501 NW 9th Ave.
Miami, FL 33136-1494
(305) 547-6666
(800) 327-4545
e-mail: [email protected]
web site: www.parkinson.org
The Michael J. Fox Foundation
840 Third Street
Santa Rosa, CA 95404
(800) 850-4726
web site: www.michaeljfox.org
Parkinson’s Disease Foundation
William Black Medical Research Building
Columbia University Medical Center
650 West 168th St.
New York, NY 10032
(212) 923-4700
Parkinson's Institute
1170 Morse Ave.
Sunnyvale, CA 94089
(408) 734-2800
e-mail:
[email protected]
Prepared by Family Caregiver Alliance in cooperation with California’s
Caregiver
Resource Centers. Reviewed by James
web
site:
www.parkinsonsinstitute.org
W. Tetrud, M.D., The Parkinson’s Institute and Gary Heit, M.D., Ph.D., Department
of Neurosurgery, Stanford University
Medical Center. Revised August 2000.  All rights reserved.
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